Wiki articles

Marilyn,
My dad has similar problems. I know my mother buys him
some type of Depends product, but I'm not sure which
one. It's a type of "pull-up" brief, that looks like
disposable underwear. I know they're difficult to find
b/c every time they come over to visit us, we go to
every drugstore in town looking for them, and she
always buys many packages when she finds them. Next
time I talk to her, I'll get the specific style for
you.
Melanie in OK
--- Charles and Marilyn Morris <morriscm@...

Marilyn:
This is a big problem. You get the largest Depends you can buy, and
you watch him like a hawk.
Our experience with Ken is that he gets somewhat restless when he is about to
move his bowels. If we rush him to the bathroom right then, we usually can
catch it. Also, we put him on the toilet every morning and get him to try.
Because he has laxatives at night and we usually have to help him with a
Ducolax suppository, he usually goes then. however, accidents do happen, and
that is one of the hardest parts of this illness for the patient to accept
Ken gets so embarrassed even though we try to act as if it doesn't bother us.
Good Luck in solving this.
Barbara Smith

I'm not sure if there is a relationship between rapid heartbeat and
MSA. My mother had episodes of rapid heartbeat for about 25 years
before she contracted MSA.
I'm not a doctor but I will tell you how her rapid hearbeat was
treated.
Initially, medication really helped. I think she took digoxin and
that pretty much controlled the episodes.
Then the problems resurfaced. To really "map" the problem, her
cardiologis had her take home a heart monitor and she wore it for a
day. This was non-invasive, strapped to her chest. Apparently it was
a little computer that recorded and saved a record of her heart's
activity for a day. Later it was analysed.
Eventually it was determined that she needed a pacemaker...though she
also continutes to use the dogoxin.
She is now 84 and although her other MSA symptoms continue to
escalate, her heart doesn't bother her.
My lay opinion is that MSA is basically a degenerative disease of the
autonomic nervous system, the system that control "involuntary"
activity such as breathing and yes, the heartbeat. I believe they are
related. Thankfully, there are lots of things we can do to help the
human heart, literally and metaphorically.
Hope this helps. Take care.

I'm responding to an earlier note about relieving bedsores. (The same
note asked about sores within the mouth and I'm sorry not to have any
suggestions for the latter.)
Though it is not inexpensive, there is a special device that can
greatly relieve bedsores. It looks like an air mattress and is hooked
up to a motor (compressor). It lies on the bed, between the patient
and the regular mattress.
The compresser automatically fills every other airmattress chamber
with air; then automatically, it deflates those chambers and slowly
fills the others. The result is that the pressure points between the
patient and the mattress are being constantly changed.
I'm not sure about the price but perhaps insurance will help cover it.
Hope this helps.

PTSD is Post Traumatic Stress syndrome
jane

Fascinating:
"Our studies provide conclusive evidence of oxidative damage in
alpha-synuclein," she added. "Such stress may be a primary event leading to
the onset and progression of neurodegenerative synucleinopathies,
particularly Parkinson's. This may pave the way for developing therapies to
stop or slow the oxidative damage, and thus slow or reverse the progression
of these diseases."
... Okay, someone hand me the anti-oxidants! ;-)
Thanks for sharing, Pam. Really appreciate your research!
Regards,
=jbf=
John B. Fisher

There is a virus which shows up with this heading:
Snowhite and the Seven Dwarfs - The REAL story!
I've been getting this message in my inbox regularly since before Christmas.
I can't tell where it originates but I suspect some people on this list have
it and don't know it. If you open the attachment it gets into your system
and sends itself to everyone in your address book.
You can read more about this virus here:
http://www.symantec.com/avcenter/venc/data/w95.hybris.gen.html
http://www.zdnet.com/zdnn/stories/news/0,4586,2663123,00.html

This was from Arnie Gruetzmacher, the former National Ataxia Foundation
president and now Board Member and Annual Conference Chairman. If anyone
will be attending the conference in Prior Lake, MN in April please tell
Arnie hello from me.
For more information on the conference see: http://www.ataxia.org
Hugs,
Pam

Beautiful Thanks for sharing.
Barb in Arlington. Texas where it is very wet.

OK! I'm here, but it isn't easy to get on for me. I don't know what

Hi all;
Mother had a wonderful birthday. No squabbles from her kids!!!!
Mother was raised in the South, so green chile for noon lunch and red chile
for supper, it can't get any better than that!
I pick up my sister, Irene from the airport on friday night an hour late so
we didn't get to bed until after 3am. On saturday four sisters a niece and
her daughter relaxed in the sauna. Between showers and sauna we melted for
over 2 hours. Then I gave my three sisters a back massage, like I do for
mother. They were really impressed! Oh I gotta tell you what the old folks
did for mother on friday. We treated donnuts and coffee and they sang "Happy
Birthday". Well the exercise instructor knew Mable was having a big party at
my brothers house and she was teasing mother about having male dancers. So
when we were leaving the pool she had us wait by the side while all the old
men, about a dozen, danced and turned around and shook their butts at mom.
Mother laughed and laughed, she just couldn't believe it, not at her age
would she ever see that.
Today was wonderful, it started out with the trees newly frosted with ice.
We had a blessing for mother at the church. Then to my sisters to eat green
chile and fix mother hair again. The party was very nice about 50 people
showed up, lots of cousins. This evening mom told me it was a good day. She
was pleased.
Thanks for all the Birthday wishes, I will pass them on to her.
here are a few pics. sorry they are jeg, not gif...they will be slow to
view. All of us girls and one brother. I'm the one way in the back.
the close up is Mable M. Brady Neubauer, my beautiful mother.
Mary Ann-

Dear Friends,
I've been reading this list for most of a year. In some cases, I make some
comments, probably too many. At first, I became impatient with the chit
chat and got off of the list for awhile. For the past several months, I
have participated and must say that I look forward to hearing from each of
you. It is like we are all one big family, all caring for the others, even
if it is by long distance. I need your help.
Bowel incontinence is becomming more and more of a problem for my husband.
He does self catherization and I help sometimes. The bowel issue is getting
to be hard to handle. He is still barely mobile through the use of a heavy
duty walker and lots of help from friends and family.
What do you use? Where do you get apropriate supplies? He is large...at
least a 46 waist... How do you hold disposable materials on a man?
I would appreciate any help or suggestions.
Thank you for any help.
Marilyn in TN

There is a Dr. Jamie Vasquez in Nashville, TN (not at Vanderbilt) who has an
extremely high success rate. He helped our daughter-in-law.
Good luck to you.
Marilyn in TN

PANCAKES
or
on
to
push
but
it
we'll
get

Pam,
It is interesting that he mentions stem cell research in conjunction with MSA
There must be some evidence that it may lead to a cure there also.
Take care, Bill and Charlotte

Tim, My mother Joyce (71, died 11/00) was diagnosed with the striatonigral degeneration form of MSA. I would be interested in your symptoms. With the exception of a really sore arm once in awhile, my mother thankfully never had any pain. Is your pain all over? I know others on the list have spoken of pain.

Sounds as though you hit the jackpot with your Fairfield neuro. Debbie

-----

Happy, Happy Birthday from the mountains of Tennessee.
Ann from Soddy,TN

lol.... thx
cheers
sheila

New stud rooster

Hello I'm a new listmember with an autoimmune disorder. I was
wondering if anyone knew of any docs at Vanderbilt or otherwise that
specialize in treatment of autoimmune disorders in regards to
fertility. Any help would be greatly appreciated.
Barbara in Fla

Hi Mary
You have done so much to keep Warren going and I truly know how worn out
you also have been. Most women have been caregivers all their lives and
don't know how to be any other way. What most of us have forgotten is
that we aren't as young as we used to be and life has not left us in a
state to bounce right back. I have worried about you as I worried about
Barb Selleck and all the other caregivers.
We care deeply about the spouse who has the disease but most of the
caregivers have no way of dealing with the stress, depression, lack of
sleep and general overwork. There are few outlets for that plus one
must at the same time keep up and maintain a household and be
responsible for everyday living because life does go on around you as if
nothing out of the norm is happening within your family. There are so
few people and places available who are willing to come in to help.
Bill has just now hopefully found someone to come a few hours a week.
I have wracked my brain trying to figure out why this keeps happening.
There are people who need help, there are people who need jobs, there
are people who are in need of comfort and there are people who can be
trained to help and comfort. Why then can't we figure out how to make
this happen.
Mary you can cry on my shoulder any time just as Vera knows she can. We
are all in this together and the only way we are going to get through it
is to stick together. I'm so sorry to hear that Warren has lost so much
of his memory. I had so hoped that once he was back home things would
get better for him.
Hang in there Mary
Much Love
Sally

Happy Birthday, Mabel. The big 80, Have a great day.

Download Netscape Instant Messenger here:
http://www.aol.com/aim/ Click on "Get it Now"
Then come to the MSA Chat room:
http://home.inforamp.net/~pbower/msachat.htm
Click on "Join my chatroom" to enter.
Chat time is Sundays, 3PM Eastern until ????
Last week lots of people showed up at 5PM Eastern so why not drop in anytime
and see if someone is around. The room is always open.
Hugs,
Pam

http://www.grg.org/ParkO2Dam.htm

Dear Nikki,
Sorry for your loss. Our thoughts and prayers are with you.
Mary S.

"Curing Parkinson's Disease in our Lifetime"
By Abraham N. Lieberman, M.D., National Medical Director, National Parkinson
Foundation
Parts 1 & 2
Part 2 mentions the Parkinson-Plus disorders MSA, PSP and CBD.
http://www.parkinson.org/lifetime.htm
http://www.parkinson.org/lifetime2.htm

Shelia
I'm still laughing. I loved it!!
Sally

Tonya,
My dad's still holding his own. He recently dealt with a congestive heart
failure issue and gained 17 lbs. of fluid. Luckily, with med. changes, he
was able to lose most of the fluid and avoid a hospital stay. My dad
appears to have the Shy-Drager version of MSA. He's had it probably 12+
years (when considering when symptoms started). He can still walk and take
care of his own personal hygiene, etc. issues. His blood pressure drops and
bowel/bladder incontinece have been the worst issues. He currently self
caths but still has to urinate way too much--esp. at night (maybe every 1-2
hrs.)--even with the head of the bed elevated. I think there may be some
sleep apnea issues, but he doesn't want any tests for this.
It's wonderful your mom has such a positive attitude; I definitely think
this helps as the person is more motivated to do what they can to get
better. Hopefully, this will help her in her speech therapy. Please let us
know how that goes. You'll be amazed at how much you'll learn from this
list, just by reading what others go through.
Have a good day,
Rose

S. Wood
There are various problems with the heart control, but only a few have had
problems with the heart muscle in MSA. Are you taking Florinef or Midodrine for
the BP flucuation? Rapid heartbeat has been a problem with a couple of people
on the list, but often it is a sign of an infection. My wife had a great deal
of problems with erratic heartbeat when she had an infection. People with MSA
can get all types of infections fairly easy (urinary tract infection, pneumonia,
blood infection and yeast infections). MSA also causes you to run a lower than
normal temperature (as low as 96 deg) so often a temperature of 98.6 can mean
you have a fever.
Take care, Bill and Charlotte

Here's my list of 41 good things about a bad stock market, put together with help from investment experts Ted Aronson, William Bernstein, Kevin Bernzott, John Rekenthaler and Meir Statman.

1.
Your 11-year-old has gone back to trading baseball cards.

2. You can once again see old bears on television. They look rested.

3. It might be possible to find a contractor in Silicon Valley.

4. Your once-boastful neighbor is a lot less chatty.

5. You no longer feel inadequate for failing to make your first million by age 30.

6. Your boss's mood doesn't hinge on getting 100 shares of tomorrow's IPO.

7. You can laugh even louder when a stock analyst refuses to say "sell."

8. You don't feel sheepish anymore about owning mutual funds.

9. It's been months since your daughter's boyfriend last offered to lend you money.

10. Bond is no longer a four-letter word.

11. You're still baffled by the New Economy, but now it doesn't matter.

12. There are no more of those pesky capital gains to report on your tax return.

13. You can land a second date even if you don't have stock options.

14. Your parents can't afford to visit.

15. There are fewer fawning articles about smug Internet billionaires.

16. Your children have stopped calling with investment advice.

17. Your friends no longer break out laughing when you mention the words "dividends" and "earnings."

18. Gray hair is once again an advantage when conducting business.

19. Legendary value investor Ben Graham can stop turning in his grave.

20. You can finally admit that you never bought shares of JDS Uniphase. And, frankly, you're sort of glad.

21. Your electrician no longer asks for stock tips.

22. At cocktail parties, you can go back to talking about football.

23. When you get home in the evening, you're not met by a giddy spouse grasping a mutual-fund statement.

24. You don't have to spend your lunch hour trading stocks.

25. Having a job with retirement benefits suddenly seems like an exciting proposition.

26. Your broker once again makes less than you do.

27. Your stock picks are still treading water, but now your friends are envious.

28. It's much easier to keep up with the Joneses.

29. To check on your brother-in-law's stock picks, all you have to do is look at the list of "new lows."

30. Vacationing in Vegas now seems like a good investment.

31. Your son no longer wants to be Jeff Bezos when he grows up.

32. When the cat gets hungry, you can go to the grocery store, rather than waiting for the delivery from Pets.com.

33. You can mention Microsoft without provoking a fistfight.

34. When you get the local paper, it's OK to read the sports section first.

35. The kid down the street has had his Lexus repossessed.

36. When you look at your husband, you no longer think of Alan Greenspan.

37. Now, there's no danger your younger brother will retire before you do.

38. When you buy a stock, you don't get vertigo thinking about its price-earnings multiple.

39. Colleagues who left to become dot-com millionaires ask longingly about their old jobs.

40. You can spend Friday evenings with somebody other than Louis Rukeyser.

41. There's no need to waste time looking for hot stocks. There aren't any. [INLINE]

conld anyone tell me about the heart and m.s.a. I know it's rare but
I have had a few signs of the heart banging like a drum very fast
heartbeat wilst just siting I suffer from bladder problems and low
and high blood presser this heart thing only happens now and again my
gp caught it once but on an ecg it was fine I fee;l like i am wasting
everyones time as i am the seem to be the only one ho knows

Welcome Tim and family!
Vicodin? can u explain about that med please? Wondering if it affects
BP, heart rate, tremors, side effects.
nancy m.

Bill & Charlotte - I take Sinemet CR 50/200 3 times a day, Permax 0.1mg 3 times a day, Ammantidine twice a day, and a Sinemet 25/100 in the morning just to get the body moving. I also take Zanaflex as a muscle relaxant and Vicodin ES for the days when I'm in excruciating pain. My neurologist is leaning towards striatonigral degeneration at this point but only time will tell.

Debbie - I don't live far from New Haven and I have seen Dr. Marek for his opinion. My regular Neurologist is in near by Fairfield, CT and both my wife and I adore him as he takes our phone calls 24 hours a day and is full of knowledge and compassion. I used to work at the Stop & Shop Pharmacy in Milford! Small World.

Tim

PS. Thanks for the kindness everyone through your emails and posts!

http://www.plwp.org - People Living with Parkinson's
http://cpwg.tripod.com - Connecticut Parkinson's Working Group

I wanted to thank all of you for the wonderful abundance of information you all provided to my grandfather John Gardner. He passed away Jan 25th after suffering with MSA. The information, jokes, and just plain interaction with all of you kept him strong willed and hopefull, and our love goes out to all of you. Thanks again so much.

Nikki Boyce

Vera: Please don't leave the group. Bob gets mad at me all the time. He
thinks I'm pushing him and sometimes he doesn't swallow the pills - he will
say something like I am giving him too many and the Dr. says he shouldn't
take them all. Bob also sometimes sees the "little people" and he tells me
they don't like me also. He will sometimes tell me they told him he doesn't
have to take the Sinemet or one of the other pills. He is on an anti-biotic
for an infection on his retina at this time and he objects sometimes to that
pill also. He will tell me he is not sure any of it is helping. I think he
is just mad at the disease and I am the closest so he just lashes out because
I am here. Bob always had a good sense of humor but lately I don't know. I
told him I didn't mind him being mad at me but the "little people" that was
too much. I gave him the job of catching one because I think they are
"leprachauns" and if he catches one we will get the "pot of gold at the end
of the rainbow". Now he is mad because I laughed and didn't take him
seriously. Keep on Vera - things will work out I'm sure. Pat
in Framingham MA on a cloudy evening

Happy Birthday to Mable!!!!!!And many more.
[INLINE] Barb In Arlington

Hi all:
Just reading the messages and thought i'd add that my Mother, Mable will be
celebrating her 80th Birthday tommorrow. I picked up my sister at the
airport last night, she flew in from Alexandria, VA. Mom and I had a real
fun time at the "Y" on Friday. As we were leaving the pool, a bit eariler
then the rest, all the old guys came up close to the edge of the pool and
gave mom a little booty dance, turning around and shaking their butt for
her. She laughed and laughed. then they sang Happy Birthday to her. It
blesses my heart, that mother is having a lot of fun even if she can't do
for herself anymore. I'm expecting tomorrow to be a beautiful day for her.
Our cousins will be playing their gutiars, live music is always so much fun.
Mary Ann-

Folks,

Hello,
I am new to the group, but I could use some feedback on a family member
suffering from shydrager for about 10 yrs. now.
Connie has been a prisoner of her own body for the last 2 yrs.
With no communication except for her beautiful brown eyes.
We have had problems with bed sores, but now the problem is with sores in her
mouth.
Her jaw is almost closed shut. She is on the standard medication & muscle
relaxants.
We are looking into Botox injections as a last resort.
Any suggestions?
She is getting tired now, & her will is starting to go.
Her son cares for her at home, we try to visit as much as possible.
It was hard before but now she is suffering.
Thank You
Paula
she is getting tired now

Paula,

There is a fair chance that the Botox shots will help. My wife reacted well to Baclofen for her curled under toes.

Take care, Bill and Chalotte Werre

Dear Vera
Please hang on!! I am so sorry this has happened to you. From your
letter I can feel and understand your extreme pain and frustration both
at the disease and at Fred. I wish I could be there to put my arms
around you. You have tried so hard to put Fred's best interest always
first and now you feel that so much of that time and energy has been
wasted. You would love to scream at someone but know it would do little
good. It might make you feel better but you know it would not help
Fred.
Remember, you have always done the best you could. That's all any of us
can do. It is frustrating, I know. We have been through very similar
things with Elmer and I would just have to walk away. I have done it
several times over the last few years. What you must realize is that
you can only do so much. You can not force Fred to do something he
doesn't want to do. You can try, but it is Fred's decision in the end.
It is a difficult thing to accept.
I do understand how you feel. You are taking care of the baby and Fred
and trying to get Heather back on her feet. It is emotionally and
physically draining you, leaving no reserve left for you to function on.
Even when you were 30 it would have worn you down but would have been
able to bounce back, at our age now, the bounce back has bounced on down
the road. We no longer have that reserve anymore.
The problem is that our children and our families don't allow us to age.
They see us as the people who can still get up at 4:30 in the morning
and handle 6 things at one time and still put a full meal on the table
at night so everyone can sit down to eat together only to jump up and
run leaving us to clean up the mess, balance the check book, help with 3
school projects and bake warm cookies to have ready when they return
home and want to tell you about their tiring day.
Accepting life the way it is, I have found to be a humbling experience,
one which does not always make me happy but I am struggling each day to
still do it. Please hang in there with me, Vera. We both know where
our families would be if we gave up trying to do the right thing. I
think about it briefly but I'm normally yanked back to reality by
someone wanting something done yesterday which of course they forgot to
tell me about 2 days ago.
And, life goes on in the rolling flinthills of Kansas just as it does in
the sunshine of California with or without power.
All my love and understanding
Sally

Pardon my ignorance here if it's obvious but what does "PTSD" mean?
Fordy's Michelle in Oz

Hi,
The pictures are great. I think that Brian (oldest) looks like Charlotte.
Thank you for sharing.
Mary S.

Barbara,

I'm not sure which of my replies you are replying to. About one AM this morning that was what I replied that was what I think happened. This Colet person specializes in curing yeast infections. I think she gave Marge's Al some sort of herbal cure for the yeast infection which cleared it up and he came back on his own. But I do not believe they had to put him on the table and an hour later he jumped up cured as she implied. I would believe 5-10 days as you and I have seen that happen with MSA in the past and you are seeing again with Ken. Charlotte, Ken, Anne and others have been near death and bounced back before.

An infection makes much more sense than MSA causing death in three years. While some have died that fast, I feel it is usually pneumonia or other infection that does it. That's why you and I, along with others on the list stress being on the lookout for infection so much. Infection causes the symptoms she was concerned about- lethagy, weakness, loss of movement, loss of speech, hallucinations, etc. Clearing up the infection clears up the lethargy, weakness and hallucinations. Once they are cleared up exercise can usually help movement and speech and the timeframe depends on how long the patient was down.

Glad to see Ken is doing better.

Take care, Bill and Charlotte

Nikki,
Sorry for your loss. I didn't know your grandfather but want you to know
our thoughts are with you and your family.
Mary S.

Melanie and anyone else interested,
I keep forgetting about new comers to the list that don't know Charlotte, so
below is an email I wrote to a specific person asking about nursing homes,
infections and PEG tubes. Don't forget, there are people on the list like
Harriet, Anne and Barbara/Ken Smith who have been fighting it longer. Some of
it may not be relevant to you. You can see a picture of Charlotte, me and our
grandkids at:
http://members.spree.com/health/bwerre/
And you can see us 40 years earlier at Charmayne's website (PS she has tons of
good links) at:
http://freepages.health.rootsweb.com/~charmayn/links.html
For pictures of list members go to bottom of the page and click on support group
pictures.
Take care, Bill and Charlotte
My wife Charlotte had fatigue and back pain as early as 1987-88. And by 1989
gave up her job at Exxon (managing service stations) as too demanding. She was
able to keep working and took a job managing an office supply store which was
only open 40 hours a week.
By 1990 she was having some difficulty walking and her handwriting was becoming
very small (microwriting). At first the walking problem was attributed to a
damaged disk (repaired in 1972). But she was sent to a neurologist and they
said Parkinson's. She was put on Sinemet and Eldepryl which helped greatly and
she was able to function again. She did have violent dreams which was
attributed to the Sinemet. She felt that getting rid of the rigidity was worth
the violent dreams and continued on the meds. Even with the Sinemet, she got
progressively worse and slowly increased her medicines.
Around 1992, the neurologist said she should see a movement disorder specialist
and sent her to Dr. Pincus (a PD expert) at Georgetown University Hospital in
Washington, DC. He said the Eldepryl was to slow the PD and it was obviously
not working, so he pulled her off that and upped her to a Sinemet 25/100 every 2
hours. After several visits over two years and MRI's, he said she had a
Parkinson's Plus disorder and suspected OPCA. By late 1994, she was having
extreme difficulty walking and Dr. Pincus' office required a lot of walking, so
we had to stop going to him. By May 1994, she was unable to drive or stand long
enough to work and resigned. We were told by someone at Social Security that
she could not get SSDI as she was not "totally disabled.
Her regular neurologist had a husband who did research at NIH and referred her
to NIH (Dr. Hallet's group). She went in for a full days testing in early 1995
and got a diagnoses of MSA. In their report to our neurologist, they said she
had orthostatic hypotension and added florinef to her meds. We found out that
the person at Social Security was wrong and she was elgible because it was a
permanent disability and she started receiving SSDI in October 1995. By that
time she was in a wheelchair, sitting or laying down. She could only walk with
me providing complete balance. By this time she had incontinence and was using
the disposable briefs. Charlotte had trouble with constipation most of her life
and it got worse. But she did not get much worse for about three years.
The first of August 1998, my wife Charlotte went into the emergency room of
Fairfax Hospital with a severe blood infection, probably caused by a UTI. By
the time she came out 18 days later, she could not lift her hand off the bed or
speak. She had a PEG (gastric feeding tube) inserted while she was in the
hospital and was being fed all liquids, food and meds through the tube. She
went directly from the hospital to the INOVA Cameron Glen Re-hab center in
Reston. While there she got excellent physical, occupational and speech
therapy. Twenty seven days later, she came out able to eat a soft mechanical
diet (she still gets most (95%) water and meds through the tube) and she gets
about 50% of her nutrition through the tube, but she is able to speak most of
the time and eat some food.
If he is not getting PT, OT and ST where he is, I would suggest finding a
nursing home that offers therapy. They can stimulate his throat muscles with
certain exercises like putting a small mirror in ice then massaging either side
of the back of his throat to get the swallow reflex working again. Several
people have responded to this type of therapy. The speech therapist showed me
how to do it and we did it several times a day. Once the reflex is back, they
can get some speech back. They should also time his therapy for about 30 - 60
min after the Sinemet to give him the most flexibility.
If he is taking Sinemet, you need to let the nurses know that protein should not
be eaten for at least 45 minutes after he takes the Sinemet AND that the Sinemet
should not be taken for 2 hours after eating protein. Protein interferes with
the levodopa in the Sinemet getting into the brain and causes it not to work.
This info can be found in the sheets you get with the Sinemet or at:
http://www.health-center.com/english/pharmacy/meds/sinemt.htm
The Mirapex is from a family of Drugs (dopamine receptor agonists) which binds
to the dopamine receptors in the brain. Dopamine is what the levodopa turns
into once it gets into the brain (crosses the blood-brain barrier). Dopamine
itself cannot cross the barrier. Is his neurologist a movement disorder
specialist? If so they will work with you on getting the nurses to adhere to a
better Sinemet schedule.

Have been following e-mails from this group since July 2000. Have found them
to be very helpful. I am now asking for follow-up from anyone who has had
mental status changes after dx with MSA. My husband was dx in march 2000, in
July he started to exhibit mania, excessive spending and grandiose ideas. He
was medically hospitalized and during that time started to exhibit acute
episodes of anger which includes profanity, throwing items, yelling and
screaming, demanding immediate attention to whatever he perceives his need to
be. This is a man who had never presented this type of behavior, (we have
been married 24 yrs). He is currently on Depakote, Anfrananil, Xanax and
Seroquel, the episodes have slowed some but are still occurring. He resides
in a nursing home and I am currently having to find a different placement for
him because the current facility will no longer deal with the outbursts.
Any information anyone has would be greatly appreciated. I seem to be
getting nowhere with his psychiatrist, his primary care dr. is supportive but
doesn't know exactly what to do either.
Sorry this is so lengthy, any info or suggestions would be great.
Thanks,
Donna in Norman, Ok

Nancy,
I would try cotton PJ's with the satin sheets. Cotton breathes well and the
satin should allow you to slip easier. Maybe someone has tried combinations.
We
tried the satin pillowcase for Charlotte's hair, but it did not help, so she got
her hair cut short and "layered" (whatever that means :o) which helped greatly
with keeping her hair from becoming matted.
Take care, Bill and Charlotte
P.S. Charlotte got her new wheelchair (with the purple frame :o) This spring
if we meet at Great Falls again, you and Charlotte can have a wheelchair race
:o)

Bill,
I notice in one of your responses that you say you and
Charlotte have been fighting this for over 10 years.
Since I'm new to the group, I don't know your story.
Would you share it with me?
Also, you said that a patient should be mobile 4-5
years after symptoms appear. My father was just dx
with MSA, but has had obvious PD symptoms for two
years. Does that mean 4-5 yrs. from when the PD
symptoms appear or obvious MSA signs? I know everyone
is different, but I'd like to hear your experience.
One other question for you or anyone else reading
this. My father has lost 34 pounds in a year. Is this
common with MSA? The Drs. seem baffled about it.
Thanks in advance!
Melanie in OK

=== message truncated ===

Vera,
You poor thing! Please, don't leave the list. We need you, and you
need us! Fred IS fighting, he's just doing it in his own way. He's
angry at the illness, and it comes out as anger at you. I know this
is very hard, but don't take it personally. It's not Fred talking,
it's the illness.
As for not taking the medication, it is ultimately his decision.
Hard as that is, if he is not willing to take it, no one can make
him. If you haven't already done so, it's time to talk about living
wills, DNR's etc. Even if you don't agree with him, he has the right
to do what he wants.
This is the hardest thing, as far as I'm concerned. When I was
pushing Rob, he said to me "I feel as though you don't think I'm
doing it right." Meaning having SDS. It made me realize that
although I have to be here for him, it's his illness and he has to do
it his own way.
Hang in there, we're all here for you.
Carol & Rob

How frustrated you must be! Sabotaging one's medical treatment is not an
unusual thing. Particularly for people who are somewhat suspicious
(paranoid) of medical treatments or their caregivers, confused (dementia)
people, or obstinate. Unfortunately illness doesn't remove our personality
traits - usually makes them worse. Years ago my grandmother told my Mom
that she thought her son, w/ whom she had been living, was trying to poison
her. She said she could hear him stirring her nightly glass of milk in the
kitchen before bringing it to her so she dumped it into the toilet each
night ("You don't need to stir milk.") Turns out he was stirring in her
meds that she had much trouble swallowing otherwise and she had forgotten
that was what he was doing. Funny, unless you are the caregiver and the
meds are really important to the care regimen.
I'm finding the dementia really interferes w/ therapy regimens for my Mom.
She strongly resisted the PT and OT she was receiving at the nursing home
and consequently has been dumped out of the skilled unit into private pay
basic care. But the worst part is that she is now condemned to the
wheelchair and being fed her meals. Short of quitting my job and being
there all the time, there isn't much I can do about that kind of thing. She
would try when I was there but forget and refuse if I wasn't. And my father
undoes some of the arrangements I have made as well. So we do the best we
can do - even when it feels like someone is unraveling the sweater we are
knitting faster than we can knit it.
Blessings, Mary

tx for help w/mattress.
i thought satiin sheets and polyester pjs would help me maneuver (slip)
in and out of bed but i get very damp and sticky from perspiration.
should one or other be cotton? seems silly i know but hate it
when i can''t get up ''cause i'm stuck to bed!! w e
keep the house quite cold.
tx iin advance. n. spires

Ok guys:
Did you think that you would get away from me , suprise I found you,
but what work it was. The name I wanted everyone and their mother had
it. Took me a month of Sundays just to fine one, but YES! Im
here.Sorry that I haven't been on lately to talk to anyone, but been
watching Heather baby when she is working and had a few hard days
with her because of baby shots also Fred hasn't been to well these
last few weeks, been weak and found out he has a UTI so been running
around to the doctors for that. Also found out that Fred hasn't been
taken the pro-amantine or the Wellburton for the last year and a
half. Everytime I've given it to him, after he gets rid of it. The BP
has dropped and that is why. He didn't think the doctor was right
about the bp dropping so wouldn't take the meds. I only found out
because he tolded me the other day, when I took his bp and it was
dropping. I feel like a fool right now. I'm really sorry that I told
people who had asked questions about the pro-amantine about how Fred
was doing on it. Little did I know. I now wonder why I even try. His
had mood swings with me, short with me and always seem to be mad at
me, but now I know why he has been that way. I almost didn't come
back on to this group, really don't feel like I have much to offer
anymore other then maybe support. Wish Fred would be more like Anne
try anything to keep going with her life, a real fighter, and Fred
doesn't even try. I just don't understand that. I am really upset
with him right now. Kind of feel like all the things I have done for
him, his just rubbed it in my face, maybe I'm just feeling sorry for
myself, but what the heck, I don't do that often, so I think I have
the right. Just wanted to say hello to the family and let you all
know I wonder how everyone is. I'm still here, just not as often.
Love Vera

Judy,

Beware, the cap on the tube pops out easily. And it makes a hell of a mess if it opens :o) A hole bitten in the tube could also mean a trip to the ER to get it replaced (big time Pain).

Take care, Bill and Charlotte

We have been told that the max the bladder can hold at one time is 1000
cc's. If there is more than that, it means the urine is baking up
into/toward the kidneys. It is better if you can eliminate uring and get
500-600 cc's at one time. If 30 cc's are one oz, it sounds like he is
producing and eliminating an little more than the right amount of urine.
According to info we have been given, we should not let it back up any more.
i believe that you should always run these questions by a good urologist.
Marilyn in TN

Pam: I do not know if I am the only one, but your messages are coming in
scrambled. I can still read them, but with difficulty. Jud

Marge,

Sorry about your name. I am glad alternative medicine has been good for Al, however I am not convinced that Al has MSA. What form of MSA did they say he had? You have never answered that. When I called you on the phone, you mentioned that his BP dropped drastically when he stood - when was that? You still have not answered what tests he has had. What symptoms does he still have that are MSA related?

I have checked and I find no treatment protocol currently in place for MSA and I check regularly, yet you state in this email that the patient coordinator told you Al would be there for treatment which is unusual at NIH or NINDS. The usual system is to be evaluated for which specific disorder you have there after none of your doctors can figure out what you have. My wife was evaluated there by the group that Dr. Hallet heads in 1995. They prescribed nothing, but did suggest to our neurologist that Charlotte be started on Florinef for her orthostatic hypotension. I got a copy of the entire report.

Also, I am quoting your email of 12/18/2000

"In Aug- Sept, 1999, he was dying." "could not rise from chair-or get on or off bed unaided."

"At the first treatment Colet and I had great difficulty getting Al on the acupuncture table. But, after the first treatment Al rose from an armless chair unaided. To say that I was shocked is to put it mildly!!"

To me that implies muscle atrophy, yet you then say that he was able to to rise from an armless chair unaided after one treatment. I have trouble with those conflicting statements. How long had he been "helpless" - you also mentioned Aug - Sept 1999 was he helpless for 6 weeks? If his muscles were atrophied for even two weeks it should take two weeks to get them back into shape enough that he could "rise unaided from an unarmed chair".

You also said:

"She told me of her plan of treatment. Acupuncture, twice a week, Cleansings and Herbs.(her book on Cleansings should be available at your library , Conquering Yeast Infections, is helpful.) She explained to me that ,"If one part of the body is sick, the whole body is sick." SHE USED 60 -90 NEEDLES EVERY TREATMENT."

That "plan of treatment" does not say anything about physical therapy or exercise.

I was under the impression that you went to this alternative medicine person twice a week. so all of this "reversal of MSA" took place in three weeks? Am I wrong?

Florinef does not cause hallucinations, it raises the BP. The drug sheet on it says specifically "The decision to stop taking the drug should be made by your doctor." You mention that Al's BP is 117/78 - is that sitting, standing or laying down? How often is it exactly that BP? I can't get exactly the same BP twice in a row. In fact today we got 114/78 in one arm and 78/48 in the other arm within a minute of each measurement.

I believe you about Sinemet causing hallucinations, but they usually go away after you have been on the medicine for a few years. It is supposed to be reduced gradually - this is from the drug sheet which comes with the medicine "Consult your doctor before stopping the drug. The dosage should be decreased very gradually. Abruptly stopping the medication can result in an acute (sudden-onset) adverse reaction." All Sinemet side effects should be gone within 30 days, so any hallucinations 16 months later could not possibly be related to the Sinemet. We live with the dyskinesia caused by the Sinemet, because it relieves the rigidity. You can feel the rigidity go away about 20 minutes after she takes the Sinemet.

The other misconception I may have comes from "reversal of MSA". Does that mean Al's rigidity is completely gone? Is his incontinence "both bladder and bowel" completely gone? Did you exaggerate how fast Al got well?

Now, if Al still has symptoms and the MSA is not better we can get to a point I can believe somewhat. If Al had a yeast infection and Colet Lahoz was able to clear it up, I can see how Al could come back in a few weeks, but not one treatment. After my wife was down for 18 days with an infection, she came back in 28 days of concentrated physical, occupational and speech therapy to where she was about 50 days before. The symptoms you describe (and say Colet cured) could easily be the result of a yeast infection and not entirely the MSA.

I am concerned that some people on the list feel that your story points to a cure for MSA, and could cause them to have unreasonable expectations. Some might even pack up their late stage patient and run to Minnesoto for this "cure" when the patient should not be traveling. Your husband should be still somewhat mobile at 4-5 years since beginning the symptoms, unless he had an infection. Infection as most caregivers know here on the list, can sap the strength in days. Many doctors do not realize the patient has infection because the MSA patient often runs a lower than normal "average" temperature and can be running a fever at 99 degrees.

Other patients may read your story and suddenly decide to cut the florinef and wind up with a dead patient when the BP drops to zero. I don't want to dispute your whole story as it may have some merit, but I do not want your exaggeration of the time factor to cause people to endanger their patients either. Most patients here that are on either Sinemet dopamine agonists or Florinef should NOT suddenly stop taking them without consulting the doctor that prescribed the medicine. Cutting medicines without telling the doctor can cause serious problems for the patient.

Take care Bill and Charlotte Werre who have been fighting this disorder since 1990.

====================================

For those who've lost the ability to speak this was suggested on the PSP list as a communication option that works for some.

If you can't read the symbols below you can go to this website.

http://www.infoplease.com/ipa/A0200808.html

Hugs,

Pam

Neurology 2000 Aug 22;55(4):527-32 Related Articles, Books, LinkOut
Evolution of sporadic olivopontocerebellar atrophy into multiple system
atrophy.
Gilman S, Little R, Johanns J, Heumann M, Kluin KJ, Junck L, Koeppe RA, An H
Department of Neurology, University of Michigan, Ann Arbor, 48109-0316,USA.
OBJECTIVE: To determine the percentage of sporadic olivopontocerebellar
atrophy (sOPCA) patients who later develop multiple system atrophy (MSA).
METHODS: Observations of the course of 51 sOPCA patients 20 years of age or
older initially evaluated in an ataxia clinic over 14 years and followed at
3- to 6-month intervals for 3 months to 10 years (median 2.5 years,
interquartile range 5 months to 4 years). RESULTS: Seventeen patients
evolved to develop MSA, whereas the remaining 34 manifested only
progressively worsening cerebellar ataxia. The features of the MSA cases
included autonomic failure and parkinsonism in 10 patients, autonomic
failure without parkinsonism in six, and parkinsonism without autonomic
failure in one. Using survival analysis methods, the authors estimated that
24% of subjects in this population will evolve to MSA within 5 years of the
onset of sOPCA symptoms (95% CI 10% to 36%). An older age at onset of
symptoms and a shorter time from onset of symptoms to first presentation in
a neurology specialty clinic were both highly predictive of evolution to
MSA. Six of the 17 patients who evolved to MSA died 4 months to 5 years
after they had met diagnostic criteria for MSA. The estimated median
survival time from time of transition was 3.5 years. In contrast, death
occurred in only one of the 34 patients with sOPCA who did not evolve to
MSA. Autopsy examination of all six patients with MSA who died confirmed the
diagnosis. CONCLUSIONS: Approximately one-fourth of sporadic
olivopontocerebellar atrophy patients will evolve to multiple system atrophy
within 5 years, and this transition carries a poor prognosis for survival.
Older age at onset of ataxia and earlier presentation in a neurologic
specialty clinic predicted transition to MSA.
PMID: 10953186, UI: 20411665

Dr. Sid Gilman from the University of Michigan will be speaking at the
National Ataxia Foundation's annual conference for patients and caregivers.
Dr. Gilman is well known by many on this list as his specialty is Multiple
System Atrophy, many were diagnosed by him or one of his colleagues. The
topic of his talk will be Sporadic Cerebellar Degeneration. He will likely
concentrate on the cerebellar form of MSA but I'm sure would answer your
questions about aspects of the other forms as well.
The conference will be held at the Mystic Lake Hotel and Casino in Prior
Lake, MN during the weekend of April 6th, 2001.
Deadline for registration is March 5th, 2001. For more information see:
http://www.ataxia.org/amm2001/Registration.html
I've attended two NAF conferences and found them very informative and
enjoyable. Historically they are very informal with lots of opportunity to
meet others with a similar diagnosis. When you register they will give you
a colour coded badge to wear indicating your diagnosis and they encourage
"birds of a feather" (those with the same diagnosis) to get together in the
hospitality room over the course of the weekend. Also there is usually
ample opportunity to submit questions to a panel of neurologists and
neurology researchers who are in attendance.
If anyone from this list is planning to attend you should let us know and
perhaps several will be able to meet at the conference. I won't be
attending this year but I highly recommend that others do if possible.
Hugs,
Pam

Hi All,
Mark's appointment with the Doctor today went very well. His Doctor was
amazed at how much better he is and the fact that he can now talk better then
he did before the trach. And, the best news is that he no longer has to have
his nightly tube feedings of Jevity. Everything he eats now will be by mouth
so, of course, he requested a pureed filet mignon from Longhorn for dinner.
I didn't think I could puree it but I did so he's very peacefully sleeping
now, no tube feeding and full of filet mignon!
We decided to keep the PEG for meds and liquids, it's so much easier and he
doesn't mind it being there. We have to keep a close eye on Rebecca, she now
jumps up on Mark's bed every morning to lay with him for a while and has
become fascinated with the PEG. I don't even want to think about what the
little devil could do!
Take Care,
Judy

looking for anyone who suffers from ptsd my name is angelo a vietnam
veteran i suffer from from ptsd i have for a long time i was looking
for someone who has it to see if the same symtoms occur i have
depression anxiety and constant headaches.the veterans administration
is working on getting me 100% i would rather feel better i felt if i
talked about it i would get some relief.well thats enough of my
problems.evryday its and up hill battle i lost good job in 1999 as a
police officer which i really loved,but i was asked to retire early
and its been down hill all the way i live in new jersey i have a wife
she tries to understand but she dony really only those who suffer
really know. signed angelo vitalone sr GYSGT USMC RETIRED

Pam,
The rules at NIH already forbid using aborted tissue or stem cells. Clinton
signed those rules into law months ago. The statement I saw specifically
referred to the in vitro blastocysts, but referred to them as abortion. Either
he does not know what abortion is, or he doesn't care. If you notice, he is not
going to try to reverse Roe v Wade to stop abortion, he is only going to
"prevent the killing of human cells" - wonder if he has thought about those
millions of cells in the humans executed in Texas? In actual stem cell
research, the cells would not be destroyed but live on in other people - just as
blood cells give life to others in transfusions. If they are NOT used for
research they will be "killed".
The article in the Wall Street Journal also quoted his "spokesperson" as saying
they would grow arms, legs and organs for sale which is also false. They only
want to grow specific cells which would then repair the nerve or muscle tissue
which was damaged. A limb takes hundreds of different types of cells and
thousands or millions of individual cells and is not practical as it would have
a finite life once it was grown (if we could ever do it).
Take care, Bill and Charlotte

First my name is Marge.. Please read everything carefully. He is not cured. His most severe symptoms are reversed.Never said he was helpless for three years. He had hallucinations for four years. He was on Levadopa/Carbidopa and Fludrocortisone for three years I took him off the meds myself, and in his case I wish I had done it sooner. Remember I stated that the Hallucinations started in 1996 , three weeks, after he started on these meds. Acupuncture did loosen the tightness in his muscles. We go to a fitness center six days a week. Once the muscles are loosened it is important that one keep on exercising. Regarding NINDS, The patient co-ordinator told me that they thought he would be going there for treatment, etc. I said that No, he doesn't need that. They are working at having him at some other event. We live in the Minneapolis area in the summer. I took him for additional opinions when he was diagnosed In Sept of 1999 I was desperate to do something to help him
and went looking for Alternative Health Care. I realize that Alternative Health Care is not for everyone. Again please read our story carefully so that you do not misquote me.For us this has been good. Marge Soeffker

Subject: Junk mail

thanks for the info - converting ounces to cc. it sounds like a normal
output. i'll inquire about sleep apnea in regard to bp & urination.
Bob's symptoms are ridgitity, ataxia & dysartria. regards, jerrie

We are keeping you and Ken in our prayers. It is so hard to let go, but
sometimes that is the only option left. You have put up a good fight and
now it is time to let go.
Ann from Soddy,Tn

Mary,
I agree with the age thing, as I have to get up at least once during the night
and (although I don't measure it feel two pints (32 ounces) would probably be a
good estimate. I heard somewhere that an adult bladder would easily hold 500 ml
which is about one pint.
Take care, Bill and Charlotte

John,
Charlotte's worst fear in crowded places was that someone would knock her down.
She also did not like the grandkids running near her for the same reason. The
wheelchair fixes most of that problem. After people back into it or fall over
it - they watch out for it. :o)
Of course if I had gotten her a motorized wheel chair, she would be mowing them
down like bowling pins. Strike! Spare! Split :o( Charlotte was always a
good athlete. She carried good averages in bowling and had many trophies for
high women's average and high women's game as well as our first place team
trophies :o) I seldom had either high score or high average trophies, but
always had first place team trophies. In mixed leagues, Charlotte always
bowled 4th and I always bowled last. We won our league 5 straight years and
three of those years we won the league in the last frame of the last game -
Charlotte and I both marked big time.
She did not develop clumsiness until about 1985 -1987. Her dad did have a
Parkinson's shuffle for at least 20 years before he died. Rough for a waiter.
My dad had polio in 1917, so he did not walk well either.
:o) Only sick people like to read computer books. Just start pushing buttons,
something will happen :o) I used to like fiction, but have no time for it
anymore. :o) did read chess strategy books however :o)
Take care, Bill and Charlotte

He says specifically that he won't fund if the stem cells come from aborted
fetuses. He doesn't address whether he'll fund research on stem cells from
discarded fertilized eggs.
Hugs,
Pam
----
Bush Won't Fund Stem Cell Research
The Associated Press
Jan 26 2001 4:40PM
WASHINGTON (AP) - President Bush said Friday that federal money should not
pay for research on fetal tissue or so-called stem cells derived from
abortions.
``I do not support research from aborted fetuses,'' he said.
He did not say whether he would move to block federal research funding - an
act that many scientists say could stop promising research into therapies
for numerous diseases. Aides said afterward he was signaling his intent to
do so.
Bush had indicated his opposition to such research during the presidential
campaign, but the remarks Friday were his first on the topic since taking
over the White House a week ago.
``I will let you know when I decide all policy decisions, but the answer to
your question is no,'' Bush said when asked whether he believes federal
money should be spent on fetal-tissue and stem-cell research from abortions.
On Monday, two days into his presidency, Bush had moved to restore
restrictions on U.S. foreign aid to family-planning organizations involved
in abortion. Anti-abortion conservatives were a cornerstone of his political
campaign.
Scientists say research with stem cells, master cells that are the building
blocks for all other tissue in the body, could lead to revolutionary
treatments for problems from Alzheimer's to paralyzing spinal cord injuries.
Stem cells can come from aborted fetuses or from embryos left over from
fertility clinics. A few also can be found from adult tissues, but
scientists say fetal and embryonic stem cells are the most flexible and thus
most usable.
Bush did not specifically address embryonic stem cells.
Some conservative groups oppose using embryonic stem cells for research
because culling them kills the embryos. Scientists now know how to multiply
embryonic stem cells in laboratories without killing additional embryos.
Unless Bush intervenes, the National Institutes of Health plans to begin
funding research with just those lab-grown embryonic stem cells as early as
this spring.
Some researchers are concerned that Bush might cut off existing funding for
a larger type of research related to tissues from induced abortions. Some
Parkinson's disease patients, for instance, improved after receiving fetal
tissue transplants in their brains.
Bush has said in the past he supports an alternative method using fetal
tissues retrieved from miscarriages. But scientists say such tissue is
seldom usable because of genetic abnormalities in the fetus that caused the
miscarriage.
``I believe there's some wonderful opportunities for adult stem-cell
research,'' Bush said. ``I believe we can find stem cells from fetuses that
died a natural death, but I do not support research from aborted fetuses.''
He commented in a question-and-answer session during a meeting with
Democratic and Republican governors.
Shortly before Bush took office, his spokesman refused to address whether
the new Republican administration would shut down government research on the
stem cells of discarded human embryos.
Press secretary Ari Fleischer, quoting his boss' statements during the
campaign, said Friday that Bush ``would oppose federally funded research for
experimentation on embryonic stem cells that require live human embryos to
be discarded or destroyed.''
But Fleischer, questioned by reporters, would not say whether Bush intends
to block the NIH, which is now accepting grant applications for research on
lab-grown embryonic stem cells initially harvested by private researchers.
Bush stopped short Friday of saying whether or how he might block the NIH
funding.
Incoming Health and Human Services Secretary Tommy Thompson has likewise
sidestepped the issue. But as an anti-abortion governor of Wisconsin,
Thompson praised as medical pioneers the University of Wisconsin scientists
who first grew embryonic stem cells in their laboratory.
The White House is reviewing all rules and executive orders implemented by
the Clinton administration, including those on abortion-related research.
Copyright © 2001 The Associated Press. The information contained in the AP
news report may not be published, broadcast, rewritten or otherwise
distributed without the prior written authority of The Associated Press. All
active hyperlinkshave been inserted by AOL.com.

Mary,
Ken too was getting up numerous times during the night to urinate, and
I was losing too much sleep helping him with the urinal which had to be
emptied or it would overflow by morning. We were also told that it was caused
by the florinef which builds up retained fluids during the day and allows
them to be released during the night when the BP rises. This has always made
sense because Ken would suddenly urinate a lot if he laid down during the day
whether he was asleep or not. This is what precipitated the use of Condom
Catheters. With them, I could get some sleep.
Barbara Smith

Bill,
That was not even a response to your questions, just a repeat of what
he/she posted day before yesterday. I wonder if something similar is
being posted to other health-related mailing lists.
Looks like spam to me.
Do you recognize 'Marge Soeffker' from the list? One of the things I
miss about Jeff's shy-drager pages was the ability to sort by subject
line or author. It was always worthwhile to sort by author and read
all your posts.
I'd email this person directly except then they'd have my email
address and I don't want anymore spam there either.
Doug in Greenbelt, MD USA

Jerri & Marilyn,
Al's output is 2000 cc at night. That seems like a lot so I called the
Dr/ and his nurse said that he would give him the information, and if I
didn't hear from him then I would know that it was alright. 1 ounce = 30
cc.
Ann from Soddy,TN

My dad has the same problem with his hospital bed. It appears that
the mattress supports are way too flexible. His is an Invacare 5310.
The mattress is supported by a network of springs and wires called
fabric links. That model has a seperate assembly for the headsprings
and the footsprings and the two are supposed to be linked with what
look like six big paper clips. It's not clear if the two are properly
linked together.
Also, it appears that when the head is raised that creates some slack
in the fabric links wherer the foot and head springs meet. That's
right about where your butt rests. So if you raise the head of the
bed when you're trying to get out your butt sinks down into the valley
as you describe. Same thing if you raise the head while you're lying
in the bed. Your butt will sink.
At least, that is what I can glean from the invacare webpages and the
information the invacare people have faxed to me. The people from
whom the bed was rented did not provide a manual and when I called
THEM they couldn't even identify the manufacturer or model of the bed.
I'm 350 miles away, so my information is a bit sketchy at this point.
But my brother should be there now, I'll call him tonight and see if
we can figure out a little more.
If the bed was assembled right and there are no missing parts then it
simply is a 'soft' bed equivalent to having soft mattress springs on a
standard bed.
I have to say that I had trouble getting in and out of the bed myself
and I'm not the patient. I'm with you on this, if that were my bed
I'd put the mattress on the floor and sleep there. But MSA patients
don't have that option.
The invacare website is here:
http://www.invacare.com/
If your bed is made by someone else, maybe they would have web pages
too.
You can try calling the people from whom you rented the bed and ask
them to check it out. Let them know what the problem is and see if
they can help.
Doug in Greenbelt, MD USA

Jerrie,
It could be a symptom of MSA. Does his blood pressure rise
significantly when he lies down? Since the blood pressure regulation
doesn't work properly in people with MSA, this is a common problem.
When this happens, the kidneys kick in to remove excess water from
the blood and therefore reduce blood pressure. This is bad for a
couple of reasons - you have to pee an awful lot (!), and, because
the blood volume is what keeps blood pressure UP, you have to start
all over again drinking lots of water in the morning. Try elevating
the head of the bed about 4 to 6 inches, using blocks. You could use
bricks or cinder blocks. Just elevating the head of the person (like
with a hospital bed)won't work, and may cause problems with reflux.
Let us know if this helps.
Carol & Rob

Jerrie,
My husband Warren isn't incontinent but has to get up 3-4 times at night
also. I don't measure it but there is a lot by morning. We believe it is
the Florinef and other meds that are causing it. It also be Warren's age.
It is a symptom of msa from what I read but one can't really know. Call
your Dr or Neruo, and get an opinion from them. Warren is very unbalanced
(especially at night) so we have a commode for him and it really helps alot
because he also gets very disoriented at night. Sorry I can"t help, Mary
S.

Greetings!
If it's ounces, you need to find the water main and get it fixed
quick! ;-)
Seriously, 3 to 4 times per night is a lot. If his urine output is
also fairly high, then it is something to have checked. Two things
that can cause this are diabetes and obstructive sleep apnea. Both
should be checked. Though checking for diabetes first makes lots of
sense since it costs less.
Why apnea as a cause? During the obstruction, the heart actually
produces a natural (and very effective) diuretic. Most doctors do
not know about this, so you will need to focus on snoring and poor
sleep (if that is a problem). If not, you probably ought to head in
another direction.
Regards,
=jbf=
John B. Fisher

Greetings Gail!
Okay, where's the camera? There's obviously a camera somewhere
around our house !! ;-)
When we started to go through defining the symptoms and what might
have been there for a long time, my neurologist noted that someone
with ataxia often develops a 'rolling gait'. Well, my wife started
to laugh. She noted that as early as when we were married over 20
years ago, she knew my balance wasn't the best. She said that when
we walked down the aisle after the wedding she wondered where I had
parked the horse. She had seen movie cowboys with less of a rolling
gait! ;-)
Yup. My physical therapist warned me that a natural reaction to this
is to reduce the normal range of motion. Hence why Bill and I keep
reminding people that range of motion exercises help.
Also works as a great head knocker for the kids! ;-) As much as
anything, I use it as a silent way to explain to people that I am
*not* drunk. Wish I was, cause I could fix that.
Yeah, I often close my eyes and let my wife guide me through the
confusion. As I watch all those different people and things in
motion (in lots of different directions), I start to feel sick to my
stomach.
Motion sickness is a new and unpleasant treat. I *never* had
problems with motion sickness in the past. Though I must say that
about the time my sleep apnea I found I could no longer go on a
roller coaster.
Yup. I don't have any of the more advanced issues, yet. In addition
to the movement, computer screens have a higher scan rate. This
helps keep the image more stable. (HDTV will eventually help this).
I've started to use books on tape, since my vision jumps so much when
I try to read. Fortunately, I do like to read fiction, though a good
computer manual is lots of fun for me.
Regards,
=jbf=
John B. Fisher

Madge,
That is NOT a case history! When was he originally diagnosed as MSA and WHO did
the diagnoses? How did "Dr. Khalaf Bushara, a Movement Disorder Specialist,
first saw Al in Oct., 2000 at the VA Medical Center in Minneapolis" diagnose Al
as MSA when all his MSA symptoms were gone already for 12 months or more? Who
decided to take Al off of the medicines - a doctor, you or a acupuncturist?
When did Al come off the medicines? What are Al's current MSA symptoms?
My wife's diagnoses includes notes on why the neurologists thought it was MSA
and included info on tests for:
MRI's over a 5 year span - told where specifally there was visible atrophy
EEG and nerve conduction tests - told which nerves were doing their jobs and
which were not
Did Al have these tests? What were the results? Did he show atrophy of the
cerebellar pons , whole brain, or exactly what areas of the brain?
Do his records have words like cogwheeling, cerebellar ataxia, dysphagia,
bradykinesia, vestibular ataxia, dysarthria, nystagmus, blepharospasm,
amyotrophy, corticospinal tract signs,
sleep apnea, stridor, hyperreflexia. and extensor plantar responses. cerebellar
or pyrramidal tract signs, akinesia, limb dystonia, cortical myoclonus. Some of
these words will be found in a case history of MSA, but not all. While every
case is different, there are common symptoms. If the symptoms are gone - how do
you say it was MSA, since MSA is (at this time) only a set of symptoms.
Another discrepancy with this treatment is that in MSA brain cells die. How do
you grow new brain cells by sticking needles into their bodies. If somehow
sticking the needles into the body caused dopamine producing neurons to grow
where you stuck the needles, how would they get across the blood/brain barrier.
If hallucinations are Al's major problem, taking him off of Sinemet, should cure
the hallucinations in 30 days (at most), yet you say he has been off of Sinemet
and all PD medicines for 16 months. How can you blame a protein for
hallucinations when you have not had that protein for 16 months. Proteins do
last in the body for days and possibly weeks, but not months.
You have never mentioned how Al regained muscle strength. Did he have extended
physical therapy? Muscles can not heal themselves from atrophy without
stretching them. You said that Al was helpless for three years in one of your
emails, yet popped right up off the table after one session of acupuncture.
Even if the acupuncture cured nerve problems, how did the muscles regain
strength without therapy?
I'm sorry, but if you insist on saying this woman can cure MSA, please make sure
Al had MSA. Many here took 5-7 years before doctors told them they had MSA and
many tests. It bothers me that it took 14 doctors at NIH plus 4 other
neurologists who were movement disorder specialists to decide that my wife
"probably" had MSA and your neurologist can say with one visit and no tests (15
months after Al had no more symptoms) that he definitely HAD MSA. If the
symptoms are gone - Al is cured! And he was "cured" by a woman whose specialty
is curing yeast infections with acupuncture. She has no neurological training,
yet she cures dead brain cells with pins.
Do you realize that some doctors have been saying for years that Johnny Cash had
MSA and some are now saying that he had diabetes all the time? I also do not
understand why you go to a VA hospital in Minneapolis, when you live in
Florida. I thought you had to live near the hospital you used in VA cases. You
mentioned going to Dr. Mark Hallet at NIH (NINDS) months ago, why hasn't he seen
Al?
I don't want to say that Alternative Medicine can not help at all. Obviously
that is how many medicines were discovered (like aspirin). We do know that
therapy and lots of liquids help MSA patients. But I can not conceive of a way
that sticking pins in someone can cure dead brain cells. I also can not
conceive of a acupuncturist telling you to stop taking medicines that a doctor
prescribed. Dropping medicines like florinef can kill a person. Dropping
others suddenly can also kill you.
This list is NOT the place for advertising of unproven treatments which go
against your doctor's advice. If Al had MSA show us his records in detail. I
am sure you could share them with Dr. Robertson at Vanderbilt, who IS an expert
in this disorder. The only movement disorder specialist I can find in Minnesota
is:
Dr. Paola Sandroni
Mayo Clinic
Dept. of Neurology
200 First Street SW
Rochester, MN 55905
Phone: (507) 284-2511
That's my opinion, Bill Werre

hi marilyn: the output is 36 ounces. i measured it, not a dr. regards,
jerrie

Is the output 36 ozs or 36 cc's. Genrally urine output is measured in cc.
There is a big difference between the two.
Marilyn in TN

Hi everyone: My husband bob, is not incontinent, but during the night he
has to urinate 3-4 times. The output is 36 ounces. Is this an enormous
amount, could it be a uti, or another symptom of msa? Thanks for your
reply. Regards, Jerrie

!!!!!!!!PRICELESS!!!!!!

John,
Paul's balance has been a problem as long as I have
known him, much worse of course since MSA. He is the
opca type and the ataxia is quite evident. We always
thought he was just a klutz, now he is a klutz
extraordinaire! :) There is no specific pattern to his
balance problems that I've noticed, except that if he
moves too quickly ie. turns to suddenly he will have
problems. He does use a cane when we go out, more as
a warning to others I think.
Church is a problem for him too. He has trouble
watching what is going on up front, and getting in and
out of the sanctuary in the crowd is quite an
experience. I've been suggesting that we get a wheel
chair just for those situations. With the crowding so
bad, no one can even see the cane until they bump into
him/it. At least in a chair, they would notice and
make way a bit. We have tried sitting near an exit and
leaving a little before others, but there is always a
crowd in the halls anyway. I hate to resort to that,
as he is still strong and with a little guiding hand
(the bleph complicates things since he can't always
see where he is going) can still do most things.
Speaking of eye/vision problems - He has more success
using the computer than watching TV. He thinks it is
because the TV has a moving picture and it is too hard
to continually adjust. Reading is VERY frustrating,
almost impossible since they eyes keep closing on him.
For some reason, he has the best luck on the
computer. Thank goodness! He'd have nothing to
occupy him otherwise. (He has avoided books on tape as
he is not a fiction person, his idea of recreational
reading is reading thick computer manuals)I'd be
interested to know if others have a problem with
watching television over other types of media.
Gail

=====
Gail
gsouthwick@...

hi, this is kaye.
when we rented my husband's hospital bed we bought (very inexpensive, i
believe it may have been 20 or 25 dollars) an "egg crate" designed/shaped
made of foam rubber i believe to put on top. when you put your sheet on it
keeps this "pad" in place. it's quite thick and makes the bed much more
comfortable. hope this helps.

i'm renting a hospital bed/mattreess. the maatrses bendds where beddd does
(dah!) but/aandd i get caught in the "gullies"". VERY difficult for me
to get in and out of bed. mattreses covereddd ww/plaastic wwwhich
seeems to trap air and make its own ""bumps". any thoughts. i
wonder if mat is just old and bumpy or if that is the nature of
the beast. like noW ii feeel like sleeeeping on the floor. n spires

Judy,
I'm glad to hear that Mark is doing so well-even if it
means you have to endure a few wise cracks:) Good luck
with the doctor visit.
Gail

=====
Gail
gsouthwick@...

Hi all,
Just got the email below from Anne :o) Thought it was worth passing on. She is
okay, but gets tired easily right now. She won't find out anything from her
tests for another week and a half.
Take care, Bill and Charlotte
Subject: FW: Women only car park.... finally the truth be known....
A Brisbane first!!!
With the high rate of attacks on women in secluded Car Parks, especially
during evening hours the Brisbane City Council has established a "Women
Only" car park at South Bank. Even the car park attendants are exclusively
female so that a comfortable environment is created for patrons. Please
find attached the first picture available of this world-first for Australia.

Stephanie,
Thank you for being supportive to each of us who are struggling with the problems with this disease all the while knowing that you and your family have suffered as well. December 25 sounds like a great day for the Christian to enter their eternal home. That date may not be such a good date for the family left behind. Be grateful that your father-in-law has been released fromt he earthly bounds. Again thank you for offering support for each of us.
My husband was also diagnosed in 1998.
Marilyn in TN

Hi Judy,

I am so glad Mark is doing great. My husband love his trach also. Its like Mark's, just another brand. I think it gives Dave more independence as far as trach care. I hope Mark continues to improve.

Take care, Kathy

Hi everyone, my name is Stephanie Harris{Chelsea, AL). I haven't been on the list since July or so, wow how things have changed . There are so many new names on the list that I am not sure if anyone will remember me. I was on the list representing my father-in-law who was diagnosed with SDS in July 1998, although he had symptoms for a year prior to being diagnosed. I never really shared much with the list but faithfully read all the entries, this group was such a great support to me. My husband and I attended the seminar in Chicago (in 1999,I think) and I so enjoyed meeting everyone. I was one of the fortunate ones to have met Jim Todd. (Hi Nan} I am truly honored to have met such an inspirational person. Anyway, I just wanted to say thank you to everyone on this list(present & past) and to everyone who attended the Chicago meeting. You will never know how important this group was to me. My father-in-law-died on December 25, 2000. He died peacefully in his sleep and
went home to spend Christmas with his wife. Although, losing him on Christmas day was tough, we are now at peace. Unfortunately, the last year was not good and he suffered way too long. But he is no longer suffering and he is finally with his wife (who died unexpectedly before he was diagnosed). As hard and tiring as the last 3 years have been for myself, my husband and our daughter, I know that I have grown and definitely learned a lot of life's lessons.

Enough of my rambling, I just wanted to say thank you to everyone. I probably won't be staying on the list much longer only because I am working full-time and because of all the estate things that I have to do. God Bless.

Lita, my prayers and thoughts are with you and your family.

Stephanie Harris

Yes. The tingling is all the time. I use my hands all the time for
typing, which helps keep them from stiffening (but it's definitely
there). I use neurontin to help control the tingling.
Regards,
=jbf=
John B. Fisher

Hi Becky
Just wanted to say hi!! I see you still do some reading and try to keep
up. That's about all I can do anymore too. Long days at work and the
evenings are too short and I'm too tired to do much more.
Thinking of you
Sally

Judy
I'm so glad to hear Mark is doing well with all the new gadgets. It
sounds like he hasn't lost his sense of humor either. Imagine, you may
get some backtalk out of him again. I'm thrilled for you both.
Just wanted to let you know I'm thinking of you. How's work going?? We
have a full house at the hospital and still bringing them in
............ just no rest for us, of course our CEO is thrilled, he
thinks flu season is a GOOD thing of course he has a warped sense of
humor!!
Much Love
Sally

Pat
I'm so glad we were able to help. It seemed so simple after we thought
about it. I wanted to let you know that we have just now gotten Elmer a
pair of reading glasses this week.
When we first changed his glasses this last summer he didn't want
reading glasses. Said he wouldn't use them. He now thinks it might be
nice to read the paper again or read the cards he gets. We had our eye
doc go to the nursing home and check to see what he thought Elmer might
need. He thought the reading glasses would be helpful and we all agreed
that anything that helps to keep his mind busy is a big plus.
Just wanted to let you know and to tell you that at 80, Elmer is still
holding his own with this damn disease. He has good days and some bad
days but all in all he is hanging right in there.
Sally in KS
Where it has been cold and windy but at least the sun has been shining

Hi All,
I just had to add one of Mark's silly things he did this week. It must be a
MAN thing! We got his new Passy Muir valve for the trach on Monday so the
speech therapist came on Tuesday to work with Mark, she had him do several
mouth and tongue exercises then put the valve on. She then had him do more
exercises one of which involved opening his mouth then shutting it real
tight. Of course, I was doing the same exercise along with him and she asked
Mark to try to talk.